DSRCT

DSRCT

About this blog

In January of 2006 my wife was diagnosed with Desmoplastic Small Blue Round Cell Tumor, also known as DSRCT, which is a rare and extremely aggressive form of cancer, usually with poor prognosis for survival.

After months of extensive chemotherapy, several operations, and more chemotherapy we thought she might have an actual chance of surviving. After two weeks of cautious hope our world was destroyed yet again when a scan showed that new tumors were growing in both lungs. There were no more medical means to cure her disease, and eventually she died on January 9th 2007.


To help others who are in a similar situation, my wife and I made this blog, where her entire treatment course is described in detail as a kind of diary. The blog also contains a short description of all the medication that has been part of the treatment.

January 29th, 2007

DiaryPosted by Jacob Juhl 2007-01-29 20:58:03

It has now been three weeks since Mette died, and life is slowly starting to return.

I have always loved life, as did Mette, and I choose to be optimistic about the future, despite our misfortunes. The kids are reacting in a healthy way to the loss of their mother. Marie, 2½ years old, doesn't quite understand where her mother is, but she has gradually stopped asking, and now seems satisfied to know that mummy is in heaven. August, almost 6 years old, seems to have an understanding of what it means to be dead and also accepts the explanation that Mette is now an angel, that occassionally looks down upon all of us, and wants us to be happy.

I just started work today, parttime, and I think I will enjoy getting back to business, and wrap my mind around something else.

I haven't mentioned this before on the blog, but we were moving from one apartment to another in the weekend just before Mette's death, which of course made things a little more turbulent. To be honest I'm now quite happy that we did so, because I think it makes it easier to start again, to create a home for me and the kids. In the past couple of weeks I have slowly been finding new places for things, furniture, lamps, pictures, to make this us a home, where I decide how everything looks and feels, but where Mette is present. I have put up some photographs of Mette in the kids' rooms, which they seemed quite pleased with, and the lovely paintings Mette made have gotten a prominent place on the livingroom wall.

To some people this may sound like I don't mourn or whatever, but I am starting to see a light ahead, and I am confident that I can make it as a lonely parent, that the kids and I will be allright. To me it was actually a lot harder to witness Mette's deteriorating condition in the last month, than it has been to rise again after her death. There may be hard times ahead, ups and downs, but right now I feel strong, and I choose the future!

Love, Jacob

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Posted by Angela 2007-09-04 16:45:11

Hi Jacob, Esben emailed me the news about Mette today. I am so sorry for you and the kids, but you seem to be determined to be positive about the whole thing - something like this will never leave you, but will become easier and I am sure you're strong enough to pull it off.

Love to you and the family from all of us in the UK, Angela,Jason,Laura,Charlotte and Sylvie.

Posted by Victoria 2007-03-17 18:57:51

Jacob, I almost never check DSRCT.com any more, only Patrick's guestbook (it's saved in my favourites), but i did today, I don't know why, maybe because it's St. Patrick's day...I came across your site and I read this message and I just wanted to tell you that I agree with you 100%. We are alive and we want to live because we were given a gift to understand how precious life is, though it might be hard to call it a gift...I'm very very sorry to hear about Mette and you and your children, but for all I know and can read from your site you will have a beautiful life, it will always feel sad though, but it'll be a full one, because you know what it's all about...In May it will be two years since Patrick died and it's still very hard for me to belive that someone so full of life, beautiful and kind could die...and all other useless people that I meet now are here with nothing to do. It is very hard to go on, I'm trying my best, because you don't stop loving this person just because he or she died, and at the same time you have to go on, because you are alive...So, I'm still trying to figure it out and it's very hard without his help. He was always helping me, even with my dealing with his sickness...And all some people (like his mother) are worried about is that I don't get married fast enough after his funeral while I sill, so often, feel dead, like I felt when he died...but I don't feel the need to prove anything to anyone, it's just sad that his mother is that bitter old woman that can only think of her loss and didn't for a second thought what it is like for me to continue without him...Actually I shouldn't say he is not helping me, he is, I just have to pay attention, there are SO many signs (how funny, now I think about it and I remember his face and his voice when he'd always say to my constant absentmindness: "Victoria, pay attEntion" and he'd smile sounding very serious)...

There is this CD called "Club Nocturne" by Yelllow Jackets that he gave me years ago where Jonathan Butler is singing :And we are all gonna ride this river and we are all gonna feel the rain and we are all gonna take what we are given, even the pain...

Oh, and one more thing. I was watching some American movie (quite an old one), here in Argentina, and there were the words: Life is not about losing people, but loving them when they are here and cherishing them when they are gone.

I hope it helps. Good luck with everything and if you figure it out let me know please...

Posted by Jacob Juhl 2007-02-15 21:23:14

To Meliza from SF, USA.

Dear Meliza, I hope you check back in and read this.

Thank you so much for the kind words. Every time I hear something like that it gives me strength, and to me it confirms that how I handle this situation is right for me and the kids. Please let your family and friends know that they are more than welcome to contact me if they need to talk to someone who has gone through the same doubts and fears that they are going through right now.

What has helped me tremendously along the way, and especially after Mette died, is talking about how I feel, putting it to words in a thousand different ways, to everyone I know, over and over again. But another important thing to think and talk about is being aware of how you WANT to feel. I want to feel alive again, I want to cherish every second of my life, and I know for sure that Mette wanted me to, just as you want your family and friends to live their lives to the fullest at all times, no matter what happens. I have told myself, and every poor soul that wanted to listen, that I don't want to feel sorry for myself, that I don't want to be stuck in misery, that I want to move on. And because Mette wanted me to do just that, I can do it without feeling guilty.

Be sure to let your family and friends know that you want them to try and keep on living life to the fullest, should you loose the battle.

All the best for the future, I hope you WIN!!

/Jacob Juhl

Posted by meliza 2007-02-14 20:59:39

We don't know each other Jacob, but I, too, have DSRCT. I'm very sorry to hear about your family's loss. I'm sure it will be difficult in the future. I must say that your message gives me hope and warms my heart. Although I'm still battling this disease and hope for long-term survival, I worry about how my family and friends will carry on when/if I pass. I sincerely hope that they are able to move on in the same way you are. It's simply beautiful. I'm sure Mette would think so as well. All the best to you, Meliza, San Francisco, CA, USA